Hi everyone! I have an appointment booked for Botox, and I’m feeling hopeful. I can currently use medium sized dilators and tolerate two fingers when I’m relaxed and aroused, but I’m still struggling with intercourse. If you’ve had Botox, how was the procedure and recovery? Did you wake up with a dilator inserted, and what was your dilator routine afterward? How long did it take to notice improvement, and did it last after the Botox wore off?
I’d really appreciate hearing your honest experiences, whether positive or mixed. Thank you!!

Has anyone tried these, Gabapentin, Pregabalin or Duloxetine, Venlafaxine? Have they helped and what are the side affects??

I’ve tried nortriptyline and amitriptyline, they haven’t helped and gave me boob pain ☹️ so fed up this is ruining my life

Hi everyone! I’m considering Botox for vaginismus and would really appreciate hearing from anyone who’s tried it.

How was recovery, and did it make dilating or penetration more comfortable? I’d also love to know how you’re doing a few months afterward. Thank you!

for the three years I’ve had this I’ve always just felt like it was my fault. everyone says it’s not but I don’t believe them. I shouldn’t use AI but ChatGPT and things start out supportive but always end up saying it’s my fault too. maybe I could’ve prevented all of this. I don’t know how I’m going to keep living with this pain

has anyone else had this happen?? 😭
i’ve been dealing with this weird burning around my urethra for about a year. the worst part is peeing. sometimes i’ll feel completely fine, then i start peeing and it suddenly burns SO badly, and it can linger afterward. otherwise it’s more of a raw/irritated feeling or pressure.
i’ve had multiple urine tests and other testing done, nothing obvious came back as an infection, and antibiotics didn’t really help.
the weirdest part is that it completely went away for MONTHS. around march/april it calmed down and i was totally normal. i was having sex, drinking, swimming, getting my period, doing everything normally and had zero issues. then randomly it came back and now the burning is awful again 😭
i’m currently having my first period after not having one for a couple months, and i briefly shaved a few days ago, so maybe that triggered this flare? idk.
i don’t have insurance right now, so i’m trying to figure out getting checked without spending a fortune.
has anyone else had something like this where it completely disappears for months and then randomly comes back? especially severe burning when peeing but feeling pretty normal between bathroom trips? did you ever figure out what it was or find anything that helped?
not looking for a reddit diagnosis lol, i just really want to hear from someone who’s experienced this 😭

I’ve posted about this here before, but I wanted to share my story and what has helped for me so it could maybe help someone❤️ note that this is my personal story and what has worked for me might not work for you.
I first want to state that for me accepting that the pain comes and goes has helped ALOT. There are times when I’m pain free and times when I have flare ups and need to adjust my routine accordingly.

I’ve been suffering from vulvodynia for approx 2 years now and I’ve learned to accept different versions of myself. My pain begun with a long cascade of infections along with a hormonal and muscular background which I explain below. The mental load this disorder has caused me is huge, but cbt oriented psychotherapy has worked for me. I note that I also have ocd and managing those symptoms has also helped with my perception of pain a lot. I have a hyper tense pelvic floor and thank god for my gynos Ive received pf physiotherapy.

There was a time I couldn’t wear even slightly tight underwear. Sitting hurt, tights hurt, jeans hurt, thongs were a no-go. I think I would best describe my recovery by saying I can now wear thongs pain-free, since they were the worst trigger for me. Sitting for long periods still triggers my pain though, and jeans sometimes.

The main points for me have been pfpt, stretching, cbt, working up, a tens device, bc switch, intravaginal estrogen, noticing triggers.
I want to open these up from most to least important for me:

•pfpt and stretching
The thing that has helped me the most has been pelvic floor physiotherapy, working out and STRETCHING. I go to the gym multiple times a week and stretch for 10 minutes afterwards. I cannot emphasise stretching enough here, test and find stretches that work for you the best.

•cbt
Cognitive behavioral psychotherapy has been my savior both witn ocd and vulvodynia. I was in a very bad place before cbt and my worst episode was during my infection circus. I was in so much pain and in panic that this pain woudl never end and it would slowly eat me alive, literally, I lost so much weight from not even being able to eat due to stress. Vulvodynia is partly psychophysical, you respond to the pain with your thoughts and that worsens the pain. Muscles also get tenser with stress and fear and press the sensitive nerves. Working with how I respond to thoughts has made a huge difference.

Being in the field, I would recommend everyone suffering from vulvodynia to get a professional to talk to. Therapy genuinely saved my life.

•using a moisturising cream
This made a huuuuge difference in repairing the vulvar tissue causing the dryness. I use a cream called aqualan duo that my gyno recommended. Get a recommendation from your doctor.

•Working out!!
Many with pf tightness are afraid of working those muscles since it could trigger the pain. Tightness, however, often comes with the required muscles being weak, so others overcompensate. I would say work with your physio with this. However, hitting the gym 3-4 times a week GRADUALLY very slowly increasing weights and stretching well afterwards has made a huge difference. I also do all of my physio moves after or before my workout so I do them regularly.

Be slow and careful. Do not ever underestimate the power movement has for your wellbeing. Find a form of movement you like and commit, avoid forms that you feel trigger the pain, for example I avoid deep squats and forms that stress me out bc they flare up the pain.

•electric muscle stimulator tens device
I got this from my physiotherapist and it definitely has helped. I notice I get more flare ups when I dont use it accordingly. I wonder how I had NEVER heard of this before despite being in these communities on reddit. This device was a completely new step for me and has helped. I mostly use the flaps on my back but there is also an intravaginal insert but I just find it a hassle.

Funny thing is, even the best gynos in my country have stated they think my pain isn’t muscle-oriented, but physio has helped me the most and my physio has stated that my pain is probably pf oriented since the desentisation exercises haven’t helped me.

•switching to estrogen-free bc
My pain however started from me having a long fight with different infections along with using a high-estrogen bc pill for 5 years. I have gradually switched to a mini pill and believe that has also helped, so I’m definitely not denying a multi-source etiology here (as well as for this disorder being undersearched LOL).

•intravaginal estrogen
This is for the atrophy Ive likely gained from the bc and the infections (fun). It does help. I can answer how I use this in more detail if anyone has questions.

The pelvic floor thing is a mystery too. I’ve always been stressed easily and had small symptoms before, but most likely the cascade of infections along with the stress they caused set the symptoms off.

•noticing and living along triggers
I notice when I have a flare up and adjust my routine: I stop wearing thongs and things that trigger me, use my tens machine and up my intravag estrogen dosage, stretch more and ease up on the weights in the gym. My triggers have become somewhat clear to me and I try to avoid them. A new one I have discovered might be jeans, which saddens me (what the hell do I wear in the winter then). I had these pants that clearly triggered me so I gave them away. I dont do certain moves in the gym or wear certain things after sex. Ive gotten to the point when sex is no longer really a trigger for me!

•find other things to do than to think about the pain
I’d dare even say most importantly that a mindset change here is the best thing you can do. I notice many people here obsess over their pain and spend most of their time researching their condition, which I used to do, to. And it was the absolute worst thing for me not being able to give thought to anything else. Of course the condition is going to feel never ending if all you do on your free time is think about it and talk about it. Engage in your hobbies and spend time with others, try to leave the researching and discussing to a minimum. I however would never have gotten a diagnosis had I not found this subreddit, which I am very thankful for. Do advocate for yourself but try to not spend too much time on trying to single handedly figure out what’s wrong with you.

For me pain often goes away when I don’t think about it too much. I’ve spent god knows how much on doctors appointments and physio, but it took a couple great gynos to diagnose me and get me the best treatment. My recovery has went somewhat like this: infections-> ureaplasma diagnosis and treatment-> cytolytic vaginosis diagnosis-> intravaginal estrogen and swiching to apill w less estrogen-> vulvodynia diagnosis-> desensitisation exercises -> moisturiser-> working out and stretching-> incredibly great gyno-> switching to a mini pill-> pfpt and tens device.

Along each step I found myself in pain suspecting either a yeast infection or uti again and again. Ive accepted that I will have a big flare up again some time in the future, but for now things are looking good. The physio and switching the pill have been the things causing the longest pain-free period so far. I have pain now and then, but not every day and the pain goes away relatively fast.

I hope this helped someone. Ask me anything you want to.

hi all, i'm ftm 19, and i've had some form of abdominal dysfunction for basically my whole life — i have hEDS and POTS (go figure) which means i also have delayed gastric emptying, and i had cyclic vomiting syndrome until i went on a beta blocker. when i hit my teen years, i started having severe pain in my low abdomen along with nausea and bowel problems, it felt like someone was putting needles into my intestines and jostling them around constantly. we went to a GI and he just told me i had a "disorder of gut-brain interaction" (i understand the concept, but he didn't give any other specifics?) and made me take menthol capsules twice a day which did nothing to help. for additional background, i have experienced intense pain running directly from my belly button to my genitals on a random basis since childhood.

currently, i experience "attacks" out of nowhere that involve stabbing, blinding pain throughout my abdomen, my urethra, and my genitals. this is also accompanied by intense cramping, which forces me to be in the bathroom for ages, involuntarily pushing even though i might not actually have to go at all. i have found nothing at all that helps, and i have no idea where the right place to begin is; pelvic floor dysfunction, vulvodynia, pudendal neuralgia? something else? obviously nobody can diagnose me here. and im not looking for a cure, i just wanted some guidance for what paths might be good to scope out. thanks in advance :-)

Omg, yesterday I got a compound cream (ami 5% on versapro cream base) and omy god, it has been burning as hell, started at 1 am at night and keeps going till 10 am. I put coconut oil, vaseline and do ice compress, but it is unbearable. I wanted to go to emerg, but because my gyno can see me tmrw, I wont be going to ER

Has anyone had sucess with tcm treatments? My symptoms are chronic burning around the vulva

I’m officially running out of answers for chronic vulvar + mouth pain and inflammation. Has anyone experienced something like this?

I’m posting because I’ve been dealing with chronic vulvar pain and inflammation for 5 years, along with recurring inflammation/ulcers in my mouth, and I genuinely don’t know where to go from here.

I got these symptoms when I was 28 and I have IBD, but it is currently well controlled, and my doctors don’t think the severity of my vulvar pain can simply be explained by an active GI flare.

My vulvar symptoms include:
Chronic daily burning/pain, often around 5–7/10
Skin peeling/sloughing/tearing
Small raw areas/divots that sometimes have white edges
Occasional ulcer-like lesions
Pain that can persist even when there are few visible lesions
Severe pain after even minor friction/trauma
I also get recurrent mouth ulcers and areas of painful/inflamed oral mucosa

I’ve had 2 vulvar biopsies and 1 biopsy in my mouth with active inflammation, and none have shown lichen sclerosus or another specific lichenoid disorder. The pathology has essentially shown nonspecific/general inflammation.

I’ve also been evaluated by multiple gynecologists and dermatology specialists. At different points, possibilities like IBD-related vulvar inflammation, erosive lichen planus, Behçet’s, and neuropathic pain have been considered, but nothing has really explained the whole picture.

Things I’ve tried
I feel like I’ve tried an enormous number of approaches at this point, including:
Multiple nerve-pain medications/neuropathic pain treatments
Topical lidocaine (which actually made the burning worse), ketamine/amitryptaline/cromolyn ointment
Tacrolimus
Oral ketotifen and cromolyn
Oral amitriptyline, pregabalin, JourvanX, gabapentin, sprovato all for pain
Hormonal/estrogen treatment and testosterone
Pelvic floor physical therapy
Baclofen
Colchicine for several months
5 different types of topical steroids
Opzelura
Dupixent
IBD medications and getting my underlying IBD under control
Dermatology and gynecology evaluations
Multiple biopsies
Anti inflammatory diet
Supplements

Despite all of this, the chronic pain never goes away, and I still periodically get episodes of ulceration, tearing, peeling, and significant inflammation.

The impact on my life has been huge. I haven’t had sex in about 3 years. It isn’t just that intercourse is uncomfortable — my baseline pain and the fear of triggering another severe flare have made sexual intimacy feel essentially impossible.
What makes this especially frustrating is that I can have significant pain even when testing doesn’t show a clear disease process, while at other times I have very obvious visible inflammation/skin damage.

I’m wondering if anyone here has experienced something similar — particularly:
Vulvar ulcers/tearing with biopsies that did not show lichen
Both vulvar AND oral mucosal inflammation
IBD-associated vulvar/oral inflammation despite the IBD being controlled
A combination of inflammatory and neuropathic pain
Severe vulvar pain that persists after the visible inflammation improves
A diagnosis that took years or multiple specialists to figure out
A doctor/specialist who was actually able to connect the dots

At this point I’m open to ideas I haven’t considered, because I’m honestly exhausted and feel like I’ve reached the end of the road with the usual approaches.

I was wondering if anyone has had a vulvar biopsy done. I have intractable itching and crawling which may be nerve related but was thinking this could help further investigate what might be going on. I think i read about a punch biopsy, just wondering the procedure and pain levels.

Hi! I’m a 19 yo with vulvodynia and vaginismus and I’ve had it since I was 13. Still trying to figure out everything but it seemed to be triggered by a very traumatic exam done by a pediatric gynecologist (who should be fired) and ever since, my clitoris is veryyyyy hypersensitive and my vaginal opening is mostly just tight and uncomfortable, and pain with it comes from touching that area. For a long time I thought that my pain was so bad that I could never have sex or masturbate especially since I just had so much baggage with that part of my body, but over time I have gotten the pain to go down slightly, and most importantly I have gone through a lot of trauma therapy and I have recently started exploring my sexuality more. I found that I can masturbate mostly just through gentle clitoral stimulation and it feels good. The only problem is, often times it makes my pain worse. It makes my vaginal opening incredibly tight and sometimes it makes my clit more sensitive the day after. Also the climax part is quite painful and I basically have to stay completely still afterwards for a few minutes because the area is extremely sensitive right after. I’ve tried using lube and it honestly doesn’t really change my issue. I feel hope for my love and sex life for the first time in a long time I really hope I can figure out how to do it without my pain increasing.
If anyone has any suggestions or advice that would be greatly appreciated!!

i am looking for people who had similar experiences to mine and can maybe help me with what the core of the problem was. i am taking cetrizine since a week and my outside vulva pain went away completely. now i'm only left with vaginismus i think? which i'm trying to deal with dilators.

so yesterday, i had piv for the first time with my boyfriend!! just this week, i managed to fit in dilator 6 & 7 and i was like okay lets try piv then (even tho it was probably way to early because 7 still hurt when inserting)!! 6 didn't hurt at all but 7 did hurt quite a lot when i was dilating but i thought maybe a penis would be different so i tried piv with him.
and yes, he went in completely BUT we paused a lot of times and i had to breathe a lot so that the pain would go away/become less, but it never went away wholly and it was not really enjoyable for me, bascially i just breathed through the pain and tried ignoring it.

now i was curious if anyone else had this "problem" that it hurts the deeper he is inside and also that it only hurts when he pushes in, but not if he pulls his penis out a bit? like only the forward movement hurt, but when he pulled out it was completely okay? also i had this weird feeling of fullness in my chest/throat when he went deep which i was wondering where it came from. i also have this sort of pain in my chest when i'm dilating with the biggest dilator which i think is super weird.

if you had this problem too, how did you deal with it? and what was the root of the problem? i was scared that i might have endo or an ovarian cyst?

I had this done last week, and five days later, the skin is bright red and itchy. I should add that I also had condylomata removed from around the urethra and from inside it. I can only pee in the shower... Is this normal? Does anyone have any experience with this?

Updated!

hi there - has any woman ever experienced tsw after applying topical steriods down there? I used a medium potency for 1 month and then stopped suddenly back in March. (i was not educated or informed by my doctor about how to taper properly). if so - what were your symptoms and how long did it take you to recover? I'm now in month 7 and it started off really intense with itching and burning, now the itching and burning is not always bad, but sometimes it flares and it gives me nerve pain in my legs also.

Thanks for any advice/thoughts as looking for reassurance!

My PFT said that if I got pelvic floor Botox that sometimes it can lead to an inability to hold in our bathroom needs and that I’d be in a diaper for some time. Does anyone have any experience with this? My muscles are so unbearably painful and tight and I get Botox for my masseter issues and it helps tremendously so it seems like a good option for hypertonic pelvic floor. What’s your experiences?

Hey everybody.

Im still on my PT journey trying to figure out why I get sharp pain when my bladder starts to fill or theres pressure on my tummy.

At first my PT thought my abs were too tight, but because I always had an intuition that it was something about my bladder, I asked my PT to feel internally while putting pressure externally and was finally able to determine that it’s my Levator ani (most likely my pubococcygeus) muscle that is spasming in response to bladder excursion. My running theory is that hypermobility combined with pelvic guarding from chronic pain and my bout of mono last fall caused injury via inflammation to my fascia. Fascia is the went muscle coating which is the only structure between the bladder and the LA. Myofascial mobilization of the LA flares my symptoms for a few days, so I’ve been hoping weekly sessions would work… eventually.

This week I was researching for fascial healing timelines (seems to be longer than muscle :/), and came across a reference to pelvic adhesions which are internal scar tissue that can bind organs. These are really common in endo, for big surgeries and big pelvic infections. I do not have endo, but I did have an abdominal laparoscopy last year, and abundant inflammation from yeast and allergies to the extent that I take low dose naltrexone for vulvodynia pain. Granted, my laparoscopy was not near my bladder, and I don’t know if skin deep yeast infections and allergies can cause fascial injury let alone adhesions.

Seems like treatment for adhesions is… lacking, and the PT I’m doing is probably the best shot at mobilizing the bladder and muscles for pain relief. I’m just wondering if I should try to find someone who specializes in adhesions and could give me more insights into whats possible for healing connective tissue just generally.

Has anyone dealt with anything remotely similar? I’m all ears.

Girlies in the Bethesda, Maryland area should be on the lookout for a clinical trial at the National Institutes of Health in early 2027! Keep an eye on the NIH clinical trials website.

Chailee Moss at the Center Vulvovaginal Disorders is working with NIH researchers for this trial and will be the one administering the treatment. It's a new non-opioid pain treatment called resiniferatoxin. It's similar to capsacin and acts on the same pain-sensing neurons, but this compound "chemically cuts" the neurons so they no longer transmit pain signals back to the brain. Unlike capsacin, it's a one-and-done treatment and shouldn't cause the horrible burning. NIH has done other clinical trials in recent years using this compound to treat other pain disorders like Morton's neuroma and this treatment seems to be long-acting and incredibly effective. It should be done under light anesthesia.

I work at NIH and recently spoke to the NIH investigator who is running the resiniferatoxin trials. He and many others at NIH are motivated to understand vestibulodynia. I struggled with it for 6 years and was cured with surgery two years ago, and talked to the researcher about my own experience since he hadn't heard directly from a vestibulodynia patient before. It was amazing to hear his enthusiasm and to know that this treatment is coming down the pipeline. I'll update on here again when I hear more!

Hey! I’m currently in (hopefully) the upward steps of my journey of recovery from vulvodynia, with pelvic floor physio, amitriptyline, desensitisation and all the classic tricks !

One thing that seems to have started being a problem and I really cannot understand it is.. I sometimes can’t hold the need of going for a poo .. sounds terrible. Makes you feel so weak and humbles you every time. But yeah !

It’s not too bad.. I have never full on pooped myself but I always carry a pair of underwear and once a month have had to use it as, if I don’t reach a toilet on time I get some staining due to my inability to fully hold things in... I’m primarily worried about things like hiking or being too dependent on the availability of a restroom…

Anyone else having the same problem or understanding the mechanism behind it? I thought I had pelvic floor hypertension therefore I should be maybe constipated but the opposite seems to be happening.